Re: I NEED 10 HIGH CALORIE IDEAS was: When to throw in the towel....What did El

[Guest guest]

I don't really much advice for the condition that you are dealing with

as I know nothing about it, but my son is almost 5 years old and still

nurses a few times a day and at night. We also have to eat every 2-3

hours as he and I get very hypoglycemic if we don't. What has really

helped us is increasing our healthy fat intake. Fat has tons of

calories! We do fresh raw butter from the farm, cod liver oil,coconut

oil, olive oil, freshly made lard from the farm, fat from meats, etc

etc. This has really really helped us. And luckily, healthy fats are

so easy to add to just about anything you are cooking.

More info on the importance and health qualities of traditional fats

can be found here: http://westonaprice.org/knowyourfats/index.html

Also, I know the constant nursing is rough, but imagine what her

health may be like if you hadn't kept with it this long. You have done

her a great service by supplying her with all those healthy breastmilk

calories. Be proud mama! :-) I hope things improve for you soon and

allow you cut back some on the constant nursing.

K

Hashi's, Fibro, CFS, adrenal fatigue (mostly healed!!!)

Kids: son Rhowan 5 yrs old, chronic loose stools/diarrhea (we've seen

some thickening with SCD yogurt!), ADHD behavior (this is improving

too!), salicylate intolerance; daughter Willow 6.5 yrs old, salicylate

intolerance

SCD take two 1 month (haven't redone intro yet)

>

> Guys, We would never return to the Sadiet. I trust that SCD is

biologically correct.

>

> Still searching for answers, I reviewed Dr. Haas's book again. Does

anyone know why Dr. Haas says ONE year, and Elaine says one year after

the last symptoms leave? Making that about two for some of us with

CD? I don't want to mess up here.

>

> Still having to confront constant hunger because of HIGH metabolism

and impaired digestion due to metabolic condition though.

>

> People we are talking 3000+ calories a day. She is a small 28

pound child. If we are to stay SCD HOW do I DO THIS?

>

> I need a few more HIGH CALORIE ideas. And ways to make a child

compliant to eating more and nursing less....whenn she is already

eating every 3 hours around the clock. Trying to wean from human milk

and supplementing these lost calories has proved to be impossible. I

do not blame SCD!

>

> 1200 of this 3000 that she has to have is human milk. She is eating

every two or so hours around the clock. NIGHTS included.

>

> When I wean 1000+ of this 3000+ is TAKEN AWAY. She is three, I

would like to wean a bit...if not completely.

>

> WE are still nursing like an infant (sometimes up to 10 times a

day). I am certain that this is not behavioral because of the weight

loss that goes with it when we wean. She simply is not ready due to

her condition.

>

> Some kids with her condition end up with G tubes and IV ports due to

not being able to consume enough calories to sustain metabolic issues

and still grow well. I do not want this either! I need to wean

though.

>

> Again, she IS THREE YEARS OLD. I Have been nursing like this since

her birth 2004. Talk about committed...but I am throwing in the

towel...more on this than SCD!

>

> Oh, how I wish Elaine was here at times like this! If it is at all

possible, thank you for helping us keep our daughter SCD. After the

research and success we have had I am not just going to say goodbye to

" fanatical " yet.

>

> BUT GUYS the entire picture is not being seen by you. I am

EXHAUSTED.....and she is too. HELP! I do not have money to pay for

private consult. Sorry

>

> When I read this post before I sent it...this just seem

ridiculous...trust I am not joking here. This is typical for a kid

like here. WHAT a life!

>

> Antoinette and family of Five

> (FANATICAL 100% SCD since 2/06)

>

>

>

>

[Guest guest]

The fact that she can receive breast milk sounds like a high calorie Godsend.

I'm not sure why you are trying to wean.

-

Kuykendall wrote:

I don't really much advice for the condition that you are dealing with

as I know nothing about it, but my son is almost 5 years old and still

nurses a few times a day and at night. We also have to eat every 2-3

hours as he and I get very hypoglycemic if we don't. What has really

helped us is increasing our healthy fat intake. Fat has tons of

calories! We do fresh raw butter from the farm, cod liver oil,coconut

oil, olive oil, freshly made lard from the farm, fat from meats, etc

etc. This has really really helped us. And luckily, healthy fats are

so easy to add to just about anything you are cooking.

More info on the importance and health qualities of traditional fats

can be found here: http://westonaprice.org/knowyourfats/index.html

Also, I know the constant nursing is rough, but imagine what her

health may be like if you hadn't kept with it this long. You have done

her a great service by supplying her with all those healthy breastmilk

calories. Be proud mama! :-) I hope things improve for you soon and

allow you cut back some on the constant nursing.

K

Hashi's, Fibro, CFS, adrenal fatigue (mostly healed!!!)

Kids: son Rhowan 5 yrs old, chronic loose stools/diarrhea (we've seen

some thickening with SCD yogurt!), ADHD behavior (this is improving

too!), salicylate intolerance; daughter Willow 6.5 yrs old, salicylate

intolerance

SCD take two 1 month (haven't redone intro yet)

>

> Guys, We would never return to the Sadiet. I trust that SCD is

biologically correct.

>

> Still searching for answers, I reviewed Dr. Haas's book again. Does

anyone know why Dr. Haas says ONE year, and Elaine says one year after

the last symptoms leave? Making that about two for some of us with

CD? I don't want to mess up here.

>

> Still having to confront constant hunger because of HIGH metabolism

and impaired digestion due to metabolic condition though.

>

> People we are talking 3000+ calories a day. She is a small 28

pound child. If we are to stay SCD HOW do I DO THIS?

>

> I need a few more HIGH CALORIE ideas. And ways to make a child

compliant to eating more and nursing less....whenn she is already

eating every 3 hours around the clock. Trying to wean from human milk

and supplementing these lost calories has proved to be impossible. I

do not blame SCD!

>

> 1200 of this 3000 that she has to have is human milk. She is eating

every two or so hours around the clock. NIGHTS included.

>

> When I wean 1000+ of this 3000+ is TAKEN AWAY. She is three, I

would like to wean a bit...if not completely.

>

> WE are still nursing like an infant (sometimes up to 10 times a

day). I am certain that this is not behavioral because of the weight

loss that goes with it when we wean. She simply is not ready due to

her condition.

>

> Some kids with her condition end up with G tubes and IV ports due to

not being able to consume enough calories to sustain metabolic issues

and still grow well. I do not want this either! I need to wean

though.

>

> Again, she IS THREE YEARS OLD. I Have been nursing like this since

her birth 2004. Talk about committed...but I am throwing in the

towel...more on this than SCD!

>

> Oh, how I wish Elaine was here at times like this! If it is at all

possible, thank you for helping us keep our daughter SCD. After the

research and success we have had I am not just going to say goodbye to

" fanatical " yet.

>

> BUT GUYS the entire picture is not being seen by you. I am

EXHAUSTED.....and she is too. HELP! I do not have money to pay for

private consult. Sorry

>

> When I read this post before I sent it...this just seem

ridiculous...trust I am not joking here. This is typical for a kid

like here. WHAT a life!

>

> Antoinette and family of Five

> (FANATICAL 100% SCD since 2/06)

>

>

>

>

[Guest guest]

I think she just wants to be able to cut back some at least because

her daughter is still nursing as much as a newborn and has since

birth. That level of nursing round the clock for 3 years straight

takes a lot out of a mama.

-K

>

> The fact that she can receive breast milk sounds like a high calorie

Godsend. I'm not sure why you are trying to wean.

>

> -

[Guest guest]

Yes, I know -- the woman is a saint! It just sounds like this child will be

exhausting to care for no matter what (as all sick children are), and nursing

might be the least exhausting way with many benefits. I did extended nursing

with all of mine, (not 10 times/day), but a friend's friend was in a similar

situation. The 3 YO had cancer at 8 months, leukemia by 2, and breast-feeding

is probably what kept her alive until 3 (now almost 4).

I'm just trying to think of all the alternatives and are they less taxing on

mama or the same with less benefits or even more taxing?

-

Kuykendall wrote:

I think she just wants to be able to cut back some at least because

her daughter is still nursing as much as a newborn and has since

birth. That level of nursing round the clock for 3 years straight

takes a lot out of a mama.

-K

>

> The fact that she can receive breast milk sounds like a high calorie

Godsend. I'm not sure why you are trying to wean.

>

> -

---------------------------------

Don't get soaked. Take a quick peak at the forecast

with theYahoo! Search weather shortcut.

[Guest guest]

Chris...you hit the nail on the head. You said:

" I think she just wants to be able to cut back some at least because

her daughter is still nursing as much as a newborn and has since birth.

That level of nursing round the clock for 3 years straight

takes a lot out of a mama. "

I would like to say one big MOOOOOOOO! to that comment. LOL! I feel

like I am part DIARY COW. It has no doubt saved her, just as much as

SCD has saved her. I am proud...tired and proud.

She had undiagnosed pancreatic insuffiecency. That of a CF baby and

nobody knew it. Before SCD formulas would land her in the

hospital...she was so carb, fat and protein intolerant. I use to say

that she was " allergic " to food...but nobody believed me. NOW I know

why! She couldn't digest anything but human milk...with all it's

enzymes that are already in the stuff. BUT SHE HAS always needed more

milk than usual. YOu would have thought that she would have been a FAT

little thing....nope.

Before prescription enzymes SCD allowed her to digest the easier to

digest SCD foods...because it is all monosacharide. NOW we know about

this and with enzymes can now eat everything that is SCD legal.

Doctors are so SLOW. IT took the AUTISM SOCIETY to alert us that she

needed checked for this! NOT her origional doctors.

I will not wean her. NO WAY (Tried...done that...blew up in my face/I

know she would be on G tube in two months if I did this to her)...but I

do need a break. Because of her ASD/ " aspie " attitude about everything

she will not take human milk in a cup, bottle, or any creative way. I

have bought every nipple known to mankind too! I have also tried

making coconut milk, almond milk....and every imaginable smoothie known

to SCD man. I have even tried buying human milk from a milk bank. My

husband has tried...friends.....everybody...In hopes to get a break.

NOPE...she wants it the way God intended...full of LIVE enzymes and

immunological factors. She wants the MOOOOO COW. Makes her feel

better in every way. THIS CHILD WILL NOT allow you to cuddle her

unless at the breast....so this is an added bonus that keeps me going.

Plus, when I try to wean her...she cries like she is dieing... Now I

have two other children who are weaned...this is not the typical " I got

you " cry....she is truly broken about it. I think she knows that it

has saved her and she is wondering why I would " abuse " her in this way

(taking her mama milk away).

For those who wanted to know, with mitochondrial disease the cells are

not utilizing the nutrient properly. The mitochondria are the power

house of each cell....they turn glucose into ATP (energy).

www.umdf.org They are everywhere in the body, this malfunction can

happen to ANY organ (ie pancrease, brain, skeltal muscles and

intestines) causing ASD, hypotonia, chornic infections, intestines that

do not work at 100%, and more. ....there fore some children with this

are always hungry....becasue they truly are starving in a strange way.

I that she is functioning at 70%. Call it mommy intuition. Life is

truly organizing the day around her energy efforts. Concervation of

ENERGY is as important as the SCDiet and my Breast Milk. SHE SLEEPS 14

hours or more a day still....and eats....sleeps, and eats....around the

clock....at least SCD took her deleriums and non stop screaming away.

THANK GOD. She smiles now and is talking....I could hug ELAINE G!

I was so happy to see support aorund the nursing thing. The five year

old that is still nursing makes me realize that if it is working...why

fix it? Just to find her on a G tube or IV port. Scares the he** out

of me. I pray I find a supporting doctor!

Now to find RESPITE and get more ear plugs for the doctors who want me

to feed her corn starch pudding, potatoes and wean her! Frightening.

Because they think they know what they are doing...and since no mito

kid has done SCD before...I truly am winging it and going on FAITH. I

have to keep her healthy....or they will throw in the towel for me!

When people see her smile....if they only knew what is going into

making this little girl glow. I just won't be able to complain to the

doctors. Or they will want to " fix " it.

Antoinette mom to Kiki-3 Fanatical SCD 2/06

[Guest guest]

My child didn't develop autism or LKS until I weaned him at 2 and a half. Talk

about regrets! I really believe the breast milk held off his disease for as

long as possible. But I found nursing exhausting. So what is a mother to do?

Rob or Sunseri wrote:

Yes, I know -- the woman is a saint! It just sounds like this child

will be exhausting to care for no matter what (as all sick children are), and

nursing might be the least exhausting way with many benefits. I did extended

nursing with all of mine, (not 10 times/day), but a friend's friend was in a

similar situation. The 3 YO had cancer at 8 months, leukemia by 2, and

breast-feeding is probably what kept her alive until 3 (now almost 4).

I'm just trying to think of all the alternatives and are they less taxing on

mama or the same with less benefits or even more taxing?

-

Kuykendall wrote:

I think she just wants to be able to cut back some at least because

her daughter is still nursing as much as a newborn and has since

birth. That level of nursing round the clock for 3 years straight

takes a lot out of a mama.

-K

>

> The fact that she can receive breast milk sounds like a high calorie

Godsend. I'm not sure why you are trying to wean.

>

> -

---------------------------------

Don't get soaked. Take a quick peak at the forecast

with theYahoo! Search weather shortcut.

[Guest guest]

What a heartwarming story. You are working so hard for your little

one! It is tough when doctors don't always know what is best and

actually discourage things that ARE working, like the nursing. Yes, I

agree, get some ear plugs. TRUST your intuition. NO ONE knows what is

best for your child but you. And when you need to complain, I (and I'm

sure many others on this list) are hear to listen! :-)

I've emailed you offlist as well. :-)

Take care,

K

Hashi's, Fibro, CFS, adrenal fatigue (mostly healed)

Kids: son Rhowan, 5 yrs old, chronic loose stools/diarrhea (some

improvement with SCD yogurt!), ADHD, salicylate intolerance; daughter

Willow 6.5 yrs old, very minor GI issues, salicylate intolerance

SCD take two 1 month (haven't redone the intro yet)

>

> Chris...you hit the nail on the head. You said:

>

> " I think she just wants to be able to cut back some at least because

> her daughter is still nursing as much as a newborn and has since birth.

> That level of nursing round the clock for 3 years straight

> takes a lot out of a mama. "

>

> I would like to say one big MOOOOOOOO! to that comment. LOL! I feel

> like I am part DIARY COW. It has no doubt saved her, just as much as

> SCD has saved her. I am proud...tired and proud.

>

> She had undiagnosed pancreatic insuffiecency. That of a CF baby and

> nobody knew it. Before SCD formulas would land her in the

> hospital...she was so carb, fat and protein intolerant. I use to say

> that she was " allergic " to food...but nobody believed me. NOW I know

> why! She couldn't digest anything but human milk...with all it's

> enzymes that are already in the stuff. BUT SHE HAS always needed more

> milk than usual. YOu would have thought that she would have been a FAT

> little thing....nope.

>

> Before prescription enzymes SCD allowed her to digest the easier to

> digest SCD foods...because it is all monosacharide. NOW we know about

> this and with enzymes can now eat everything that is SCD legal.

>

> Doctors are so SLOW. IT took the AUTISM SOCIETY to alert us that she

> needed checked for this! NOT her origional doctors.

>

> I will not wean her. NO WAY (Tried...done that...blew up in my face/I

> know she would be on G tube in two months if I did this to her)...but I

> do need a break. Because of her ASD/ " aspie " attitude about everything

> she will not take human milk in a cup, bottle, or any creative way. I

> have bought every nipple known to mankind too! I have also tried

> making coconut milk, almond milk....and every imaginable smoothie known

> to SCD man. I have even tried buying human milk from a milk bank. My

> husband has tried...friends.....everybody...In hopes to get a break.

>

> NOPE...she wants it the way God intended...full of LIVE enzymes and

> immunological factors. She wants the MOOOOO COW. Makes her feel

> better in every way. THIS CHILD WILL NOT allow you to cuddle her

> unless at the breast....so this is an added bonus that keeps me going.

> Plus, when I try to wean her...she cries like she is dieing... Now I

> have two other children who are weaned...this is not the typical " I got

> you " cry....she is truly broken about it. I think she knows that it

> has saved her and she is wondering why I would " abuse " her in this way

> (taking her mama milk away).

>

> For those who wanted to know, with mitochondrial disease the cells are

> not utilizing the nutrient properly. The mitochondria are the power

> house of each cell....they turn glucose into ATP (energy).

> www.umdf.org They are everywhere in the body, this malfunction can

> happen to ANY organ (ie pancrease, brain, skeltal muscles and

> intestines) causing ASD, hypotonia, chornic infections, intestines that

> do not work at 100%, and more. ....there fore some children with this

> are always hungry....becasue they truly are starving in a strange way.

>

> I that she is functioning at 70%. Call it mommy intuition. Life is

> truly organizing the day around her energy efforts. Concervation of

> ENERGY is as important as the SCDiet and my Breast Milk. SHE SLEEPS 14

> hours or more a day still....and eats....sleeps, and eats....around the

> clock....at least SCD took her deleriums and non stop screaming away.

> THANK GOD. She smiles now and is talking....I could hug ELAINE G!

>

> I was so happy to see support aorund the nursing thing. The five year

> old that is still nursing makes me realize that if it is working...why

> fix it? Just to find her on a G tube or IV port. Scares the he** out

> of me. I pray I find a supporting doctor!

>

> Now to find RESPITE and get more ear plugs for the doctors who want me

> to feed her corn starch pudding, potatoes and wean her! Frightening.

> Because they think they know what they are doing...and since no mito

> kid has done SCD before...I truly am winging it and going on FAITH. I

> have to keep her healthy....or they will throw in the towel for me!

> When people see her smile....if they only knew what is going into

> making this little girl glow. I just won't be able to complain to the

> doctors. Or they will want to " fix " it.

>

> Antoinette mom to Kiki-3 Fanatical SCD 2/06

>

[Guest guest]

You may be able to get support and advice from your local La Leche League or

by phone from a LLL leader. They should be able to help with extended

breastfeeding or partial weaning. Although your situation is unique, they

may have some ideas that would apply to you.

I had to wean my daughter just before she turned two and that is when all of

her health, digestive, behavior, and sleep problems really started. I would

have nursed MUCH longer had my pregnancy not completely depleted my milk

supply.

For a high-calorie snack for myself, I used to make edible play-dough: one

part peanut butter, one part honey, and two parts dry milk. Dry milk is not

SCD legal but maybe you could use almond flour instead? You can make it

into fun shapes or your daughter can shape it herself if she is

developmentally ready.

You have done a wonderful job, saving your daughter by following your

instincts.

Katy

mom to Amber 2 years old -Magenis Syndrome

SCD three weeks

>

> What a heartwarming story. You are working so hard for your little

> one! It is tough when doctors don't always know what is best and

> actually discourage things that ARE working, like the nursing. Yes, I

> agree, get some ear plugs. TRUST your intuition. NO ONE knows what is

> best for your child but you. And when you need to complain, I (and I'm

> sure many others on this list) are hear to listen! :-)

>

> I've emailed you offlist as well. :-)

>

> Take care,

>

> K

> Hashi's, Fibro, CFS, adrenal fatigue (mostly healed)

> Kids: son Rhowan, 5 yrs old, chronic loose stools/diarrhea (some

> improvement with SCD yogurt!), ADHD, salicylate intolerance; daughter

> Willow 6.5 yrs old, very minor GI issues, salicylate intolerance

> SCD take two 1 month (haven't redone the intro yet)

>

>

> >

> > Chris...you hit the nail on the head. You said:

> >

> > " I think she just wants to be able to cut back some at least because

> > her daughter is still nursing as much as a newborn and has since birth.

> > That level of nursing round the clock for 3 years straight

> > takes a lot out of a mama. "

> >

> > I would like to say one big MOOOOOOOO! to that comment. LOL! I feel

> > like I am part DIARY COW. It has no doubt saved her, just as much as

> > SCD has saved her. I am proud...tired and proud.

> >

> > She had undiagnosed pancreatic insuffiecency. That of a CF baby and

> > nobody knew it. Before SCD formulas would land her in the

> > hospital...she was so carb, fat and protein intolerant. I use to say

> > that she was " allergic " to food...but nobody believed me. NOW I know

> > why! She couldn't digest anything but human milk...with all it's

> > enzymes that are already in the stuff. BUT SHE HAS always needed more

> > milk than usual. YOu would have thought that she would have been a FAT

> > little thing....nope.

> >

> > Before prescription enzymes SCD allowed her to digest the easier to

> > digest SCD foods...because it is all monosacharide. NOW we know about

> > this and with enzymes can now eat everything that is SCD legal.

> >

> > Doctors are so SLOW. IT took the AUTISM SOCIETY to alert us that she

> > needed checked for this! NOT her origional doctors.

> >

> > I will not wean her. NO WAY (Tried...done that...blew up in my face/I

> > know she would be on G tube in two months if I did this to her)...but I

> > do need a break. Because of her ASD/ " aspie " attitude about everything

> > she will not take human milk in a cup, bottle, or any creative way. I

> > have bought every nipple known to mankind too! I have also tried

> > making coconut milk, almond milk....and every imaginable smoothie known

> > to SCD man. I have even tried buying human milk from a milk bank. My

> > husband has tried...friends.....everybody...In hopes to get a break.

> >

> > NOPE...she wants it the way God intended...full of LIVE enzymes and

> > immunological factors. She wants the MOOOOO COW. Makes her feel

> > better in every way. THIS CHILD WILL NOT allow you to cuddle her

> > unless at the breast....so this is an added bonus that keeps me going.

> > Plus, when I try to wean her...she cries like she is dieing... Now I

> > have two other children who are weaned...this is not the typical " I got

> > you " cry....she is truly broken about it. I think she knows that it

> > has saved her and she is wondering why I would " abuse " her in this way

> > (taking her mama milk away).

> >

> > For those who wanted to know, with mitochondrial disease the cells are

> > not utilizing the nutrient properly. The mitochondria are the power

> > house of each cell....they turn glucose into ATP (energy).

> > www.umdf.org They are everywhere in the body, this malfunction can

> > happen to ANY organ (ie pancrease, brain, skeltal muscles and

> > intestines) causing ASD, hypotonia, chornic infections, intestines that

> > do not work at 100%, and more. ....there fore some children with this

> > are always hungry....becasue they truly are starving in a strange way.

> >

> > I that she is functioning at 70%. Call it mommy intuition. Life is

> > truly organizing the day around her energy efforts. Concervation of

> > ENERGY is as important as the SCDiet and my Breast Milk. SHE SLEEPS 14

> > hours or more a day still....and eats....sleeps, and eats....around the

> > clock....at least SCD took her deleriums and non stop screaming away.

> > THANK GOD. She smiles now and is talking....I could hug ELAINE G!

> >

> > I was so happy to see support aorund the nursing thing. The five year

> > old that is still nursing makes me realize that if it is working...why

> > fix it? Just to find her on a G tube or IV port. Scares the he** out

> > of me. I pray I find a supporting doctor!

> >

> > Now to find RESPITE and get more ear plugs for the doctors who want me

> > to feed her corn starch pudding, potatoes and wean her! Frightening.

> > Because they think they know what they are doing...and since no mito

> > kid has done SCD before...I truly am winging it and going on FAITH. I

> > have to keep her healthy....or they will throw in the towel for me!

> > When people see her smile....if they only knew what is going into

> > making this little girl glow. I just won't be able to complain to the

> > doctors. Or they will want to " fix " it.

> >

> > Antoinette mom to Kiki-3 Fanatical SCD 2/06

> >

>

>

>